The experiences of fathers who have offspring with autism spectrum disorder

Research exploring parents’ experiences of having offspring with autism spectrum disorder (ASD) currently underrepresents fathers. This study aimed to develop an understanding of the experience of fathers, with a view to facilitating improved support. Eight fathers participated in semi-structured interviews exploring their experiences of fathering children with ASD. Fathers described their experiences as a path towards acceptance, with independence and integration for their offspring being key goals. Fathers saw themselves as advocates fighting obstructive services to access appropriate care. The value placed on formal and informal support varied, although the need for personalised support was emphasised. Enabling fathers to see their experiences as a journey, whilst engaging them on the important topics of independence and integration, may improve their experience

The complex role of social care services in supporting the development of sustainable identities:insights from the experiences of British South Asian women with intellectual disabilities

Background and aims: Carers and service users with intellectual disabilities from minority ethnic groups have typically been reported to be dissatisfied with the social care services they receive. However, service users themselves have rarely been asked directly about their experiences of social care. This paper aims to understand the meaning of social care services in the lives of South Asian women with intellectual disabilities, in the United Kingdom. Method and procedure: 10 British South Asian women with mild-moderate intellectual disabilities were interviewed about their experiences of social care services. The transcripts were analysed using interpretative phenomenological analysis. Results: The analysis produced three super-ordinate themes, which focus on how services facilitate the development of complex identities, how the participants explored their sense of being ‘stuck’ between cultures as they negotiated their journeys towards independence, and the triple disadvantage which they experienced as a consequence of the intersection between gender, ethnicity and disability. The participants were broadly satisfied with the role which services played in these domains, and appeared to find them valuable and helpful. Conclusions: The results suggest that the participants successfully managed complex identity issues, such as acculturation processes, with the support of services. It may be helpful to give more explicit consideration to the positive role which good services can play in supporting people with intellectual disabilities in the development of their identities and goals, alongside the more traditionally ‘concrete’ objectives of such social care. Engagement with families in ‘positive risk-taking’ is likely to be an important component of success

The Feasibility and Acceptability of an Experience-Based Co-Design Approach to Reducing Domestic Abuse

One means of reducing violence against people experiencing domestic abuse is to improve the pathway which they use to access help from the police and other services. In this paper we report and reflect on a project which contributes to violence reduction via a participatory approach to service improvement, focusing on this pathway. We describe the four phases of an innovative experience-based co-design (EBCD) project, which involved collaborating with domestic abuse survivors as well as members of the police and domestic abuse organizations. We report on indicators of the acceptability and feasibility of EBCD in this context. We also reflect upon the potential of the EBCD approach for involving communities in collaborating with services to reduce domestic abuse. We discuss the conceptual and methodological implications with regard to adopting participatory and inclusive approaches in contexts where power-sharing may be difficult. We argue that EBCD has considerable potential for use in this setting and we identify several areas where insights from this project could be used to improve the future viability of any such initiatives

Cultural affordance, social relationships, and narratives of independence:Understanding the meaning of social care for adults with intellectual disabilities from minority ethnic groups in the UK

Objectives: To explore the perspective of adults with intellectual disabilities from minority ethnic groups, on their relationship with social care services. Methods: Thirty-two adults took part in semi-structured interviews. Transcripts were analyzed within a Pluralist framework, adopting the structure of Template Analysis and then drawing on phenomenological, narrative, and discursive approaches. Results: Our participants were generally positive about the services which they received, which they evaluated primarily in terms of their continuing good relationship(s) with specific workers. Our respondents were sophisticated users of cultural resources and identities; the concept of ‘cultural affordance’ may be useful alternative to ‘cultural competence’. We discuss three distinctive narratives about independence (Stability; Progress; Resistance). Each highlights the importance of maintaining connectedness to others, and the crucial role played by ownership of decision-making. Conclusions: We have developed a set of resources which service providers (and researchers) can use with people with intellectual disabilities, in order to support mutual understanding, service planning and delivery

A case series to examine whether people with learning disabilities can learn prerequisite skills for cognitive behavioural therapy

AbstractAlthough cognitive behavioural therapy (CBT) is recommended for the treatment of a number of mental disorders among the general population, the ability of individuals with learning disabilities (LD) to understand CBT concepts and engage in CBT has been questioned. Aims: To examine whether specific prerequisite skills for CBT can be taught to people with LD using a newly developed training intervention and to investigate the acceptability of the intervention. Method: The study adopted a within-subjects case series research design. Quantitative assessment methods were used to evaluate the CBT skills of six adults with mild to moderate LD pre-intervention, following intervention and at 1-week follow-up. Participants were also asked to provide some qualitative feedback about how they had experienced the intervention. Results: The cognitive mediation skills and the ability of most participants to link activating events to emotions increased following intervention training and this improvement was maintained for four of them at follow-up. The feedback of participants regarding the process and content of the task demands was positive. Conclusions: The findings suggest that people with LD can learn some of the skills considered necessary to participate in CBT, such as cognitive mediation. However, further and more robust research is required to substantiate these findings.</jats:p

The use of different sepsis risk stratification tools on the wards and in emergency departments uncovers different mortality risks: results of the three Welsh national multicenter point-prevalence studies

OBJECTIVES: To compare the performance of Sequential Organ Failure Assessment, systemic inflammatory response syndrome, Red Flag Sepsis, and National Institute of Clinical Excellence sepsis risk stratification tools in the identification of patients at greatest risk of mortality from sepsis in nonintensive care environments. DESIGN: Secondary analysis of three annual 24-hour point-prevalence study periods. SETTING: The general wards and emergency departments of 14 acute hospitals across Wales. Studies were conducted on the third Wednesday of October in 2017, 2018, and 2019. PATIENTS: We screened all patients presenting to the emergency department and on the general wards. MEASUREMENTS AND MAIN RESULTS: We recruited 1,271 patients, of which 724 (56.9%) had systemic inflammatory response syndrome greater than or equal to 2, 679 (53.4%) had Sequential Organ Failure Assessment greater than or equal to 2, and 977 (76.9%) had Red Flag Sepsis. When stratified according to National Institute of Clinical Excellence guidelines, 450 patients (35.4%) were in the “High risk” category in comparison with 665 (52.3%) in “Moderate to High risk” and 156 (12.3%) in “Low risk” category. In a planned sensitivity analysis, we found that none of the tools accurately predicted mortality at 90 days, and Sequential Organ Failure Assessment and National Institute of Clinical Excellence tools showed only moderate discriminatory power for mortality at 7 and 14 days. Furthermore, we could not find any significant correlation with any of the tools at any of the mortality time points. CONCLUSIONS: Our data suggest that the sepsis risk stratification tools currently utilized in emergency departments and on the general wards do not predict mortality adequately. This is illustrated by the disparity in mortality risk of the populations captured by each instrument, as well as the weak concordance between them. We propose that future studies on the development of sepsis identification tools should focus on identifying predicator values of both the short- and long-term outcomes of sepsis

Evidence of initial success for China exiting COVID-19 social distancing policy after achieving containment.

Background: The COVID-19 epidemic was declared a Global Pandemic by WHO on 11 March 2020. By 24 March 2020, over 440,000 cases and almost 20,000 deaths had been reported worldwide. In response to the fast-growing epidemic, which began in the Chinese city of Wuhan, Hubei, China imposed strict social distancing in Wuhan on 23 January 2020 followed closely by similar measures in other provinces. These interventions have impacted economic productivity in China, and the ability of the Chinese economy to resume without restarting the epidemic was not clear. Methods: Using daily reported cases from mainland China and Hong Kong SAR, we estimated transmissibility over time and compared it to daily within-city movement, as a proxy for economic activity. Results: Initially, within-city movement and transmission were very strongly correlated in the five mainland provinces most affected by the epidemic and Beijing. However, that correlation decreased rapidly after the initial sharp fall in transmissibility. In general, towards the end of the study period, the correlation was no longer apparent, despite substantial increases in within-city movement. A similar analysis for Hong Kong shows that intermediate levels of local activity were maintained while avoiding a large outbreak. At the very end of the study period, when China began to experience the re-introduction of a small number of cases from Europe and the United States, there is an apparent up-tick in transmission. Conclusions: Although these results do not preclude future substantial increases in incidence, they suggest that after very intense social distancing (which resulted in containment), China successfully exited its lockdown to some degree. Elsewhere, movement data are being used as proxies for economic activity to assess the impact of interventions. The results presented here illustrate how the eventual decorrelation between transmission and movement is likely a key feature of successful COVID-19 exit strategies

Database of epidemic trends and control measures during the first wave of COVID-19 in mainland China.

OBJECTIVES: In this data collation study, we aimed to provide a comprehensive database describing the epidemic trends and responses during the first wave of coronavirus disease 2019 (COVID-19) throughout the main provinces in China. METHODS: From mid-January to March 2020, we extracted publicly available data regarding the spread and control of COVID-19 from 31 provincial health authorities and major media outlets in mainland China. Based on these data, we conducted descriptive analyses of the epidemic in the six most-affected provinces. RESULTS: School closures, travel restrictions, community-level lockdown, and contact tracing were introduced concurrently around late January but subsequent epidemic trends differed among provinces. Compared with Hubei, the other five most-affected provinces reported a lower crude case fatality ratio and proportion of critical and severe hospitalised cases. From March 2020, as the local transmission of COVID-19 declined, switching the focus of measures to the testing and quarantine of inbound travellers may have helped to sustain the control of the epidemic. CONCLUSIONS: Aggregated indicators of case notifications and severity distributions are essential for monitoring an epidemic. A publicly available database containing these indicators and information regarding control measures is a useful resource for further research and policy planning in response to the COVID-19 epidemic